you get what you give

For the last two years, my right shoulder has really ached. I called it my torn rotor cuff. It came from throwing untold thousands of footballs to my 14 year old son, Alex John, or as we called him, AJ. Trying to lead him just right on deep post patterns, trying hard to keep up with his speed. And, after the last one every time, you see, he would only let it end after he made a great catch, from catching the big lug and hugging him as he came running and jumped into my arms, yelling "the Bills win the Super Bowl, the Bills win the Super Bowl!". Just us dreaming. It came from me trying to pitch to him as fast as I could so he wouldn't hit me, but he always did. It honestly hurt enough so that I only slept on my left side and if I rolled over on it, it would wake me up in the night. But I didn't care, how could I stop doing those things? I loved it. My new problem is that over the past month or so, my shoulder has slowly but surely stopped aching. Now what keeps me awake at night is my broken heart. You see, I have no one to throw those passes to, no one to brush back anymore. Because AJ left us on January 5, 2008, a victim of childhood cancer.

This is where we post most often....

September 2016

Dear PAC2,

September is National Childhood Cancer Awareness Month (NCCAM).

This is the tenth September that we knew about childhood cancer, but probably the ninth that we knew about NCCAM, doubtful we even knew during the September he was fighting. In each of those 9 or 10 years, another 16,000 moms, 16,000 dads, 64,000 grandparents, untold siblings and other family and friends became aware of childhood cancer - because they heard those words we all heard and will never forget: your child has cancer.

In each of the next 9 or 10 years, or 9 or 10 decades, the childhood cancer community, for better or for worse, will continue to grow, until we as a community (moms, dads, family, friends, organizations, government, docs, researchers, industry) can help piece together the puzzle that is curing childhood cancer.

For the worse, that means that about another 3,200 kids (16,000 x 20%) will die annually of childhood cancer here in the US. It’s the leading cause of death by disease for kids. For the worse, that means that of the 12,800 5-year survivors, 2/3 will face long-term effects from the treatments that saved their lives and 20% of those survivors will ultimately die prematurely from the disease or side-effects. The statistics continue to be....simply wrong. The reality is that about 1/3 of the kids diagnosed will die prematurely. But these kids are NOT statistics, they are children, mine, yours, and we simply HAVE to do better.

For the betterment of the kids, each year, a large portion of those moms, dads, grandparents, siblings, friends and family are #SteppingUp, banding together, and demanding action. And each year it grows. Through the efforts of so many folks that are truly heroes (but would in turn ask you “What else could I do?”) buildings across the country and internationally are turning Gold, Governors and states are declaring September NCCAM, social media events and campaigns to #GoGold and #ShopGold are everywhere.

For the betterment of the kids, the growth of the Childhood Cancer Caucus has been another great demonstration of the success of the community’s efforts. Hyundai Hope on Wheels has been a wonderful leader and partner, helping the Caucus grow over time. The Coalition Against Childhood Cancer has grown from a simple, grassroots movement to being a leading organization demonstrating that collaboration can and does work. CAC2 and the Alliance for Childhood Cancer working together has also yielded amazing results, like the #StepUp campaign, the STAR Act and the RACE for Children Act which will give children with cancer access to the most promising treatments. CureFest is another successful collaboration bringing hundreds of advocates and organizations together in DC and is becoming the showcase, national event we've all longed for. There are simply too many organizations contributing to the puzzle to list separately - just click CAC2 or the Alliance to view a list of some of them. One quick shout out to a group you won’t see listed, the 46 Mommas Shave for the Brave.

So many folks and organizations stepping up in their own unique way, each one an individual piece contributing to the big complex puzzle that is slowly but surely coming together and will, without a doubt, cure childhood cancer. It’s an honor to be a part of it.

Jeff Gordon

Childhood Cancer

Childhood Cancer - Long-Term Outcomes

This PAC2 article estimates the likelihood of four life-long outcomes for a child diagnosed with cancer. These are the projected results:

22% live at least 30 years after diagnosis without chronic health conditions

25% live at least 30 years but face mild to moderate chronic health conditions

19% live at least 30 years but face life-threatening or disabling chronic health conditions

34% die within 30 years of diagnosis.

Every day 7 children die from childhood cancer within five years of being diagnosed AND every day 5 children that have survived 5-years from diagnosis die from the original cancer, a secondary cancer, or other long-term effects.